Tuesday we went to Children's to see most of Braska's specialists in one day. This has been our habit at 6 months, 12 months, and 18 months. It's worked well each time. That's the good news.
This post will be interesting to some, confusing to many, and is mostly for my own record keeping. So read along, but don't feel obligated to understand it all!
And by the way, please feel free to ask questions at any point about Braska's care or therapies or daily life. I love to hear from those of you who want to know more details about things for whatever reason. So don't hesitate to ask!
My mother-in-law was good enough to arrange her schedule this week so that she could join us to be extra hands throughout the day. This was a good thing! We met at Children's at just after 8:30am. We headed upstairs to the 3rd floor to start our day of waiting rooms and exam rooms.
ENT/audiology (Ear, nose, and throat, AKA otolaryngology): We see Dr. M every 3 to 6 months. He is great. The last time we were there, we saw Miss C, his nurse practitioner. She is nice, but I prefer to see the doctor in this scenario for a variety of reasons. This time, we were scheduled with Miss C again, though I had been told we'd see Dr. M. Our appointment was at 8:45am, we arrived in the office before 8:40am and checked in. After the typical verifying of insurance and paying the copay (Man, those add up in a day like this!!), we sat to wait. I had told my MIL that we rarely ever wait at any of these clinics. They always seems to be well-scheduled and very efficient. Famous last words. At ENT, we usually have her ears cleaned and checked, then we go to audiology for her hearing tests. This usually all fits within an hour very nicely. This time, we waited....and waited. We finally were taken to a room, a small exam room, where we waited a bit more. I mentioned to my MIL that they always put us in there, then they realize they need to put us in the microscope room because that's the only way to see in her tiny ear canals. Sure enough, they moved us to one of the microscope rooms and we waited a bit more. I realized it was 9:45am, and we still hadn't seen anyone!
Just a minute later, Miss C came in. I let her know right away that we were supposed to be at our next appointment in 15 minutes downstairs, and that we'd waited over an hour already. She apologized and said we'd get there on time. I gave my same speech as always... She has had no ear infections. She's not been sick. She hears very well. Her speech is good. Her therapists are very comfortable that she's hearing clearly due to her speech patterns. We have no concerns. Miss C then looked in her ears and had us put her on the big chair for the fun part. Braska hates being held down and still, so when three people are holding her head and body and putting something in her ear, she's not happy. She did relatively well, but Grandma C sure didn't care for it at all. They cleaned out her ears, got a good look, and said we could go on to audiology. It's now 5 minutes til 10 and I told audiology we'd have to come back later in the day between appointments because I wasn't going to be late for the next one. And we headed back to the 2nd floor.
Down Syndrome Center: This is always the most pleasant part of these days. I just love Alison, the nurse practitioner who handles scheduling all our appointments and also sees us every other visit. Dr. G is the doctor who sees us in between, and she's great too. It is SO SO nice to see providers who KNOW about DS inside and out and deal with us as such. Of course, I mentioned to my MIL as we sat down at 10am that I'd never waited more than 3 minutes at this clinic. Again, I was wrong. We waited about 15 minutes, but it was more enjoyable as there were some absolutely adorable kids running around in there!! Just too cute. I stared and watched them play, I admit it. One particular little girl with pigtails was totally mesmerizing. I guessed her to be 3, and I later found out I was right. She would climb up in a chair next to someone else in the great big waiting room and smile and say hello. She could chat with them, and smile and giggle, and they just couldn't help but engage with her. SO adorable.
Anyway, we got called back and here it was...the moment I was waiting for...the weigh-in. This scale is the "official" scale in our world. Most of our specialists at Children's use the same clinic space, so we often utilize this same intake/weight area. So it has been our consistent measure. I had high hopes of her hitting 20 lbs since she's now 2. So I stripped her down, including her socks and her hair bow, diaper too. And when the numbers stopped changing... 19 lbs 10 oz. Arrrggghhh! Nope, didn't make it. I'm not actually sad or anything, I just really thought she was gonna be there. So we shrugged and went back to the room. Silly little tiny girl!!
Cardiology: This is inserted here because Dr. J comes to the room while we're in the DS Center. That is so nice, in my book. What a perk. We go to one room and see two docs. Love it. Dr. J is wonderful and has followed Braska since she was discharged by her surgeon after her surgery in Spring 2007. He listened to her and said she sounded great. We chatted about how she's been and he was pleased with her size and weight gain on the curve. He wanted to do an echocardiogram since it had been a year, and that was expected. He left and said he'd check in with us after the echo as usual.
(Back to DS Center) Dr. J left and Alison came in. I just can't tell you how much we like her. From both my parent perspective and my practice manager perspective, she is great. She sat down and we had a good chat about how Braska's doing, what we are working toward, if we have concerns--which we don't--and what's next. She's very thorough and not rushed, and that's nice. She examined Braska and we discussed what labs she was due for today. She wrote out the order and recommended we wait to draw the labs til later after we'd seen the other docs just in case someone else wanted more tests so we only had to draw blood once. Good call. My normal brain would think of that, but this pregnant brain of mine...good reminder! She asked me to email her some things and would respond with a pediatric dentist name and such. She's great with email, which makes her way up there in my book! Then she walked us down to the echo lab so we could get that done.
Echocardiogram: We didn't wait too long, and there was no one else in the waiting room, but it was about lunch time, so that always means staggering staff availablility. The guy who did our echo was really nice and very cool with Braska. She laid so still and was unbelievably good for the whole thing. I read her a book at one point to keep her distracted, since she wasn't interested in the TV. Mostly, she just watched the colors on the echo monitor and hung out. I am so darn fortunate to have such a cooperative little girl! The echo tech heard me say that I hadn't eaten yet in the day and needed to squeeze in a trip downstairs to the cafeteria before heading to our next appointment, so when he came back to tell us Dr. J was on his way, he brought me a little yogurt. Isn't that nice?? I thought so. Dr. J came in, said all looked good on the echo and the EKG. Both are not "normal" but they are good for a kid who has had the heart repairs that she has, and that's what we want. We don't have to see him for another year unless we have questions or problems. Very nice!
Ok...I have to pause for now... part 2 will be along soon. Still to come: Eyes, GI, audiology, and lab.